Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, December 15, 2009

Update

So, the testing today showed definite problems with Angela's swallow. All the muscles in the pharyngeal area are very uncoordinated, and they just kind of do their own thing, none of them in unison. The fact she hasn't been aspirating constantly is nothing short of a miracle! However, watching her face, (hard blinks, watering eyes, closing her eyes completely as she swallows, and also patting her chest, caughing) and watching the monitor at the same time you can see what's happening in there and when.

But after her swallow, once the food gets past the pharyngeal area, her peristalisis looks pretty good! A little on the weak side, but well coordinated. It's the upper stuff that's the problem.

When she drinks liquids there are some spasms happening in the area of the epiglottis. When she drinks viscous liquids (so thickened slightly) there is a spot just BELOW the cricopharyngeal muscle that suddenly tightens.

With solids, as she's CHEWING, that same area just below the cricopharyngeal muscle spasms and tightens, and as she swallows the solid bolus it closes almost completely, yet her epiglotis appears to open. That means food or liquid that has stacked up there can dump right into her lungs! She was able to tell us when she had food stuck, which corresponded with what the doctor was seeing on the computer sensor.

Tomorrow we're going to try dilitation. It may not work, but it's at the bottom of the "least invasive" scale, and something pretty easy to try. If it doesn't work, we'll have to figure out what, if anything, is our next step. Even though she has remained free from aspiration pneumonia for the past 3 years, everyone is stunned. Solid food sits right in front of her airway and liquids splash around the solids and into her airway. It is NOT safe to eat or drink this way, so going back to a gtube, for the rest of her life, is a very real possibility right now.

4 comments:

Andy and Ellen Stumbo said...

Oh Leah, praying she does not have to have a gtube again!
On a lighter note, were you speaking English there? What are those words and what do they mean? LOL

Brigitte said...

Praying that you don't have to go back to the gtube! Will be waiting to hear the outcome tomorrow!!

Tamara said...

Here's praying the least invasive route far surpasses anyone's expectations!

Kathie Brinkman said...

Wow! I'm glad you are at least finally getting some real answers. Sounds like the folks in Boston know what they're doing.I'm glad Angela is in their hands.